Type 2 diabetes may actually have a distinct kind of the illness.

A false diagnosis may make it more difficult to obtain the right drugs and equipment for blood sugar management. Some Black patients are curious as to whether their race matters.

Phyllisa Deroze was given brochures detailing two forms of diabetes when she was informed she had the condition years ago in an emergency room in Fayetteville, North Carolina. She remembered that one had images of kids on it while the other featured images of elderly.

The 31-year-old English professor at the time, Deroze, wasn’t sure which pictures were supposed to represent her. According to the guide for older individuals, she was first diagnosed with Type 2 diabetes. Eight years would pass before she discovered she had a distinct kind of diabetes, one that neither brochure could adequately describe.

Adults with latent autoimmune diabetes, or LADA for short, is a common term for the illness. Individuals who have it may receive a false diagnosis of Type 2 diabetes and attempt to treat the incorrect illness for months or years. Jason Gaglia, an endocrinologist at the Joslin Diabetes Center in Boston, stated that up to 10% of people with Type 2 diabetes may truly have LADA.

Among those who were initially misdiagnosed are Deroze and three other Black women patients on the LADA patient list who spoke with KFF Health News. They said they were refused access to the medications, equipment, and diagnostics needed to adequately manage their diabetes because they did not have the proper diagnosis, which can be verified by blood testing. Three of them question whether their race was a factor.

Researchers studying atypical forms of diabetes at the University of Chicago, including pediatric endocrinologist Rochelle Naylor, noted that “that does seem to happen more frequently for African American patients and for other minoritized groups.” “Like everyone else on the planet, doctors also have unconscious prejudices that affect how we treat patients and their experiences.”

Bias has long plagued Black patients in the American healthcare system. For instance, according to a recent KFF poll, 55% of Black adults felt that in order to receive equitable treatment during medical visits, they should, at the very least, occasionally exercise caution in how they look. A discriminatory investigation has been conducted on hospital software used for patient treatment. Because sickle cell trait affects approximately 10% of African Americans, blood sugar levels for those with this trait can be underestimated even by a popular diabetes test.

Although it is purportedly unrelated to race, doctors may misdiagnose patients with Type 2 diabetes based on false beliefs about age, weight, or race, according to Kathleen Wyne, an endocrinologist who oversees Ohio State University’s adult Type 1 diabetes program.

Those with type 2 diabetes, who frequently over 45, have blood sugar problems caused by an inability of their bodies to control blood sugar levels. At least 90% of diabetes cases in the United States are type 2, which is highly prevalent in Native American, African American, and Hispanic communities. Oral drugs along with a change in lifestyle can usually manage it.

Since Type 1 diabetes was first identified in children, it was formerly known as “juvenile diabetes.” LADA is more similar to Type 1 diabetes, or is even considered to be a different kind of the autoimmune disease. Type 1 diabetes is brought on by the body attacking the cells that make insulin, a hormone that is naturally present and helps control blood sugar by assisting in the conversion of food into energy. Insulin is necessary for human survival.

According to Gaglia, LADA advances slowly, making diagnosis challenging. Insulin injections are not necessary for at least six months following diagnosis in most LADA patients, who are over thirty. However, similar to individuals with Type 1 diabetes, the majority will ultimately require lifelong injections of synthetic insulin. As a result of this delay, doctors may start to suspect Type 2 diabetes in their patients even as treatment becomes less successful.

“If you’re a betting person, you bet on them having Type 2 diabetes if they come into your office obese and/or overweight and may have a family history of the disease,” Gaglia said. “But the thing about LADA is that it gradually reveals itself.”

More than four years after receiving a Type 2 diabetes diagnosis, Houston resident Mila Clarke finally met an endocrinologist in November 2020. She described how difficult it was for her to control her blood sugar at that visit, even though she was taking oral medications and had made major dietary and exercise adjustments.

Clarke recalls hearing, “What you just explained to me, I believe, is a classic case of LADA.” “Have you ever been tested for Type 1 antibodies?”

battling the stigma associated with type 2 diabetes

people with Type 1 diabetes will often have antibodies that people with Type 2 diabetes do not because both illnesses are autoimmune. However, as Clarke described, it’s not always simple to get tested for those different antibodies.

When Clarke, now 34, was diagnosed with Type 2 diabetes in 2016, she had embraced the news at the age of 26. She launched the “Hangry Woman” blog, which offers lifestyle and nutrition advice for diabetics, and amassed tens of thousands of Instagram followers. According to Clarke, she wished to combat the stigma associated with Type 2 diabetes, which is frequently linked to being overweight.

“People with Type 1 diabetes made some of the harshest remarks I’ve ever heard, saying things like, ‘We’re not the same.'” This is not what I did. “It’s not something I did to myself,” Clarke declared. “Well, I didn’t either.”

Additionally, Clarke sensed that her first physician believed she wasn’t putting in enough effort.

She asked her primary care physician to prescribe a continuous glucose monitor after learning about them. Continuous glucose monitors are wearable electronic devices that allow patients to track their blood sugar continuously. Patients with Type 1 and, more recently, certain Type 2 patients are advised to use the monitors. “He simply told me, ‘No.'” You won’t be able to handle the amount of information, she recalled.

Clarke changed primary care physicians because she thought they listened to her better and because they recommended a continuous glucose monitor. (Clarke then accepted a paid position as an ambassador for the business producing her gadget.) After a while, the endocrinologist asked Clarke whether she had had any antibody testing done and recommended that she see the new physician. The results of the test were positive. LADA was with Clarke.

According to Clarke, it can be extremely difficult for women of color to voice their concerns in the healthcare system since doing so might make them appear pushy, know-it-all, or disrespectful. “I was right on my intuition the entire time, but no one took me seriously.”

Clarke saw a “eye-opening” shift in her treatment right away. She was recommended to a dietitian and a diabetes educator, and she began receiving insulin injections. Why, she wondered, was being tested for antibodies not simpler?

According to Gaglia of the Joslin Center, the tests have flaws and may produce misleading positive results. Nevertheless, Wyne of Ohio State maintained that all diabetic patients have to undergo testing for at least the most prevalent antibody linked to Type 1.

“If you’re identifying Type 1 before they come in with DKA and die, aren’t you saving lives?” In reference to diabetic ketoacidosis, a dangerous side effect of diabetes that is typically linked to Type 1, Wyne posed the question.

Deroze learned about a Type 2 blogger’s experience being recently diagnosed with LADA, which prompted her to ask her doctor for tests for antibodies in 2017.

Her dermatologist turned down her pleas. She believes that because of her race and weight, the doctor assumed she couldn’t have an autoimmune form of diabetes. Another endocrinologist she saw for a second opinion declined to test her as well.

“I just felt invisible,” Deroze remarked.

Following a bout of diabetic ketoacidosis in 2019, Deroze eventually convinced her doctor to run an antibody test on her. Positive findings were obtained. Apologizing, one of the endocrinologists gave out prescriptions for insulin and, eventually, an insulin pump—another common piece of equipment for persons with Type 1 diabetes.

While reading about Type 1 diabetes, she also came across the phrase “diabetes is not your fault” for the first time. After receiving a false Type 2 diagnosis, she felt as though society was taking care of her in a manner it hadn’t before. She remarked that both that and how long it took her to receive what she needed were concerning.

The Miami-based Deroze claimed, “My Ph.D. didn’t save me.” “You just look at my skin tone and body size, and it disproves everything.”